Why Donate?

 I lost count how many times I have tried to write this. I have found it difficult to talk about my experience and put it into words. Bringing up any child has its challenges. My challenge has been different from most and the hardest part about it is recognising and dealing with depression and not having the support to help guide you through the early years of your child’s life. After the diagnosis I thought things would get better and fall into place, but it was quite the opposite. There are literally books of paper work to fill out and constant appointments with various professionals. The sleep disorder and the seizures in my experience have been the hardest part to get used to. The lack of sleep is very challenging especially when you are under the ‘normal’ stress and strains that life throws at you. The seizures are very scary and upsetting as you feel so helpless. Oakley's seizures have reached status elipticus and he has had to spend much of his life in and out of hospitals and intensive care. We had brought all the baby books before Oakley was born but there isn't one which can prepare you for this experience.  

As Oakley has got older and I have been more exposed to his needs, I have found that there is a severe lack of funding for any child with disabilities, especially under the age of five (preschool). The NHS seems to have a lack of resources, there are very few nurseries to look after your child and they cannot always offer even the minimum number of hours that every child is entitled to. Being full time working parents this clearly poses problems when you do not have anywhere or anyone to look after your child when you must work. The government encourages parents to give up their careers and disadvantages those that do not, despite those people contributing more to society by continuing to work. This puts immense strain on families already in a state of disarray. 

I would consider myself a strong minded and resilient person, but this has turned my life upside down and at times broken me to the point of wanting to take my own life. Whilst there is no cure and likely will not be in my lifetime, I would like to make a difference and help make it that bit easier for families and those children having the same struggle and fight. Donations will be used specifically for specialised equipment which are expensive and often out of reach for families such as Safe Places, Epilepsy monitors, specialised car seats etc. Donations will also be used to give parents respite and support for counselling. 

The parent may be shocked, and he or she may cry or become dejected.  Sometimes parents may express their feelings through physical outbursts  or, occasionally, inappropriate laughter. 

This is an extension of stage one, and some parents may deny their  child's disability or try to avoid that reality in some other way. Some  parents will search for or try to propose various actions in an attempt  to change the reality. Some may "shop for a cure" or try to bargain for a  different reality.

At this stage, parents may feel anger. They may demonstrate their  anger outwardly, in the form of rage, or become withdrawn and passive  from intense feelings of guilt. Verbally attacking anyone who might be  blamed for their unfortunate circumstance, including displacement of  responsibility onto the original diagnostician or any supportive  professionals, is common. If the parents are feeling angry, guilty, or  both, professionals must understand this stage is a very positive point  to reach in the process of adjustment and not become defensive if  attacked.

Parents become resigned to the fact that their child has a  disability. In some situations, one or more of the family may slip into  depression. Feelings of shame, guilt, hopelessness, and anxiety stemming  from a new overwhelming burden of responsibility can become intense.  For a few parents, retreating, accompanied by an attempt to hide the  child, especially from friends and persons during organized or routine  social encounters may be the first sign that they have begun to accept  the fact their child has a disability. However, any inclination toward  or demonstration of behavior that results in abnormal isolation of one  or any family members must be prevented or eliminated.

This is the stage of acceptance, meaning the parents have achieved an  unconditional positive regard for the child. Specialists debate whether  or not this stage of adjustment includes parents who show only  acceptance of their child's condition, commonly called neutrality, or a  very important new stage of cognition when parents not only begin to  understand and appreciate their child but strengthen their skills in  coping with life's trials as well as being able to help their child,  themselves, and others. Reaching this stage is highly correlated with  the school inviting parents to become team members in a program with  caring professionals, and often paraprofessionals, that is designed to  meet all of the child's needs.

Parents are able to put their lives back together and enjoy living,  imagine a future, and talk of their child free of undue emotion. They  can discuss and participate in designing or providing instruction  objectively

Even after parents find acceptable ways to cope with their child and  their lives by following a healthy path beyond acceptance of their  child's disability, other complications can cause set-backs in  adjustment, such as unanticipated experiences of being socially rebuffed  by friends and strangers or being treated inappropriately by poorly  informed educators. Such repeated negative experiences only aggravate  the difficult process of remaining in the highest stage of adjustment.  Parents, like professionals, readily perceive the inhumanity of persons  who show little or no understanding or caring toward persons with  disabilities or their caretakers. Peoples' actions, more frequently than  events, cause parents, and the child, to regress into states of anger,  frustration, or other earlier stages of feelings and behaviors. Most  parents need assistance to progress positively and without debilitating  delay through the stages of adjustment. Their progress toward a level of  reasonable acceptance, closure, and reconstruction includes an accurate  understanding of reality, at least as they reach the usual and  customary benchmarks in their child's development. Professionals can  help parents achieve a balance between their hopes and reality. For  example, no need exists to engage in speculation about what a 4 year-  old child will be able to do when s/he has reached the age of 21. While  most parents want and have a need for professionals to be truthful as a  prerequisite to being recognised as trustworthy persons with  credibility, they do not need information that is bleak and replete with  dismal prognosis. The majority of parents will come to understand the  realities and implications regarding their child's achievement as the  various stages of development are reached and passed.